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Hello Everyone
It has been a long time since I posted but after a long journey, one that will continue way past this point, I feel comfortable in writing in this triumph section. It is a bit ironic, if that is the right term, that this board was setup after a lenghty conversation I had with Rebecca, about never thinking recovery/improvement was possible. She created this section so people like me would know that their is a brightside. Now I am ready to post here
There are a lot of "new faces" on the board but some familiar names who will remember me. For those who don't I joined the board in summer 2007 after experiencing onset of sudden severe dry eye. In the coming weeks I was determined to have a non-specific autoimmune condition. Almost 3 yrs later no definitive name has been slapped on it but I am comfortable in saying Sjogrens as I have the trademark dry eyes and dry mouth which developed shortly after the eyes. I also suffer from joint pain and other associated symptoms (Raynauds) but nothing matches the severity of the eyes/mouth.
To say the sudden onset of my symptoms through me for a loop would be the understatement of the year. I was completely devasted by what was happening to me and totally buckled under from the stress and pain.
They say that grieving involves several steps; denial, anger, acceptance, etc. Well I went through all of them mutiple times in no specific order. Anger probably was the worst of them. I was a very angry person for a long time. I was angry at my parents for "giving me" this disease. I was angry at the doctors who couldn't figure out what was happening or how to treat me. I was angry at God for letting this happen to me. I was angry at my sister for getting engaged and then married and having a life. I was angry at my friends for going on with their lives and leaving me behind. I was angry at the people on the board who were telling me it was going to be alright. Basically I was angry at every person and everything in this life. However the person I was most angry at was myself. I blamed myself for not seeing the warning signs, for not stopping this from happening.
As an extreme type A person people who knew me best couldn't understand why/how I was reacting to this so badly. I had always been so strong and had managed through many difficult situations before. Why was this time the thing that sent me off the edge? All I can answer is that chronic pain is a weird creature and imagining your life always with it can be an overwhelming thought. People need hope and when you remove hope from the picture even the strongest person on earth can come to a crippling hault.
Between summer 07 and fall 07 the pain and stress became so debilitating I ceased to live life the way I had known it. I tried to work but was in so much pain from the constant computer use I would spend literally hours in the basement floor located ladies room curled up in a ball crying. I also decided to give up my apartment in NYC and move back with my parents.
At night when I closed my eyes I could literally feel my eyelids burning. I would go to sleep with cold icepacks on my eyes. I would get up multiple times to get a new cold pack as the one I was using became room temperature. Eventually I couldn't even fall asleep anymore because the stress, nerves were overtaking me. I eventually became reliant on sleeping pills.
My parents perhaps felt even more helpless than I did not knowing what to say. They took me to every doctor imaginable in NY, Boston, etc. All the MD's said the same thing they didn't understand why I was in so much pain and perhaps the best thing is to get your daughter mental help. In hindsight the later was good advice but at the time it wasn't the response I was looking for.
I tried every treatment out there for dry eye in record time. It takes most people yrs of dry eye before they consider sclerals. I was at the Boston Foundation for Sight less than 6 months after the initial onset. I was inpatient and desperate. Neither makes for a good combination.
By winter 07 I had given up completely. I won't elaborate on my specific actions but I was hospitalized against my will.
I was eventually released but continued to struggle. I was a shell of myself and existed but didn't live. Even at my sister's wedding where I forced myself to smile it was apparent that I wasn't really there. I had gained weight and let the rest of my appearance go as well. Prior to "becoming sick" I treated myself like a true princess so it was once again an indicator that all was not well in Kim's world.
I did make a half hearted attempt in 2008 to re-enter the "world". I took too big of steps and it failed beyond comprehension and once again I was hospitalized.
The toll on my mother was incomprehensible. My father ofcourse was effected but not to be biased I think many men express their concerns differently. While I had packed on the pounds my mom had lost over 50 pounds- not trying to. She would also burst into tears at work.
After my last hospitalization she told me that her greatest fear in life was losing me to this. My parents therefore took a line of credit on their home and sent me all the way to Arizona to go to an extensive month long program for pain management/depression.
I was skeptical but basically didnt care either way. The brochure had described it basically as a resort so I figured I would get one more vacation in. I know horrible to think that way but I like to be honest in my posts.
Well I can't say a miracle happened and I left 30 days later and said I was cured because that would be a lie. I have "Sjogrens" and I will most likely always have Sjogrens but the fire in me that had been blown out ignited again. I can't pinpoint the reason and probably never will but all I can say when you hit rock bottom you have two options stay there and never get out or decide that you yourself are going to change your life. I know I am being so over the top and cheesy, but heck that's me.
When I left the center I took tiny steps as opposed to big ones which I think was my prior mistake.
I know this a long long post so I was flash forward to present.
For the last 9 months I have worked and lived in NYC again. I took a job with a company, first an entry level easy position to test my eyes, then got promoted, and then promoted again. I am a manager now. I have told my new friends at work about my dryness and it stuns most of them. I am super concentrated at my job that no one thinks of me of having any type of disability. I also have let go most of my anger so I don't exude unhappiness/sadness anymore.
My eyes/mouth are still dry as a bone but I have developed strategies to live and work with them. I have trained myself not to stare which I didn't even realize I was training myself not to do but apparently I had. I keep beverages beside me at all times which in this day and age is not uncommon for people to do. While I am open to new treatment I have given up my crazy hunt for an instant cure. The frezziness of my life has toned down and I am living in the present.
I also have lost weight, took control of my hair back from the frizz, and started wearing my pretty little work dresses again. I haven't ventured out into the world of dating but I wasn't really fully into that world before summer 07 anyhows. I have always been shy in that arena.
I am very proud of myself these days for all that I have accomplished. I don't blame myself anymore for anything. All though I am not proud of being hospitalized, etc I am not ashamed either. Everyone has to take their own road. I am just happy I found my way back to the one I had set out for myself long before any Sjogrens developed in my body.
Although I don't post often I do read the board and I always feel especially for the young girls/guys who are faced with this condition. Although this is not the easiest lot in life it is doable. Although most people dont think much of dry eye the good ones out their do recognize courage, determination, and perserverance. Thats what dry eye to me represents now.
I have dry eye, I didn't choose this, but I do choose how I survive with it.
My well wishes are with everyone and I appreciate all the support I have gotten through this board and its members.
I want to give a special "shout out" to my good friend Odydnas who has been my angel. You have been a better friend to me, even though we have never met, than those who I have known for years. Congratulations on getting into grad school and like you always pushed me to be better I will push you into accepting and following through with the offers.
Thanks again to everybody and thank you Rebecca.
Love always,
Kimberly
It has been a long time since I posted but after a long journey, one that will continue way past this point, I feel comfortable in writing in this triumph section. It is a bit ironic, if that is the right term, that this board was setup after a lenghty conversation I had with Rebecca, about never thinking recovery/improvement was possible. She created this section so people like me would know that their is a brightside. Now I am ready to post here
There are a lot of "new faces" on the board but some familiar names who will remember me. For those who don't I joined the board in summer 2007 after experiencing onset of sudden severe dry eye. In the coming weeks I was determined to have a non-specific autoimmune condition. Almost 3 yrs later no definitive name has been slapped on it but I am comfortable in saying Sjogrens as I have the trademark dry eyes and dry mouth which developed shortly after the eyes. I also suffer from joint pain and other associated symptoms (Raynauds) but nothing matches the severity of the eyes/mouth.
To say the sudden onset of my symptoms through me for a loop would be the understatement of the year. I was completely devasted by what was happening to me and totally buckled under from the stress and pain.
They say that grieving involves several steps; denial, anger, acceptance, etc. Well I went through all of them mutiple times in no specific order. Anger probably was the worst of them. I was a very angry person for a long time. I was angry at my parents for "giving me" this disease. I was angry at the doctors who couldn't figure out what was happening or how to treat me. I was angry at God for letting this happen to me. I was angry at my sister for getting engaged and then married and having a life. I was angry at my friends for going on with their lives and leaving me behind. I was angry at the people on the board who were telling me it was going to be alright. Basically I was angry at every person and everything in this life. However the person I was most angry at was myself. I blamed myself for not seeing the warning signs, for not stopping this from happening.
As an extreme type A person people who knew me best couldn't understand why/how I was reacting to this so badly. I had always been so strong and had managed through many difficult situations before. Why was this time the thing that sent me off the edge? All I can answer is that chronic pain is a weird creature and imagining your life always with it can be an overwhelming thought. People need hope and when you remove hope from the picture even the strongest person on earth can come to a crippling hault.
Between summer 07 and fall 07 the pain and stress became so debilitating I ceased to live life the way I had known it. I tried to work but was in so much pain from the constant computer use I would spend literally hours in the basement floor located ladies room curled up in a ball crying. I also decided to give up my apartment in NYC and move back with my parents.
At night when I closed my eyes I could literally feel my eyelids burning. I would go to sleep with cold icepacks on my eyes. I would get up multiple times to get a new cold pack as the one I was using became room temperature. Eventually I couldn't even fall asleep anymore because the stress, nerves were overtaking me. I eventually became reliant on sleeping pills.
My parents perhaps felt even more helpless than I did not knowing what to say. They took me to every doctor imaginable in NY, Boston, etc. All the MD's said the same thing they didn't understand why I was in so much pain and perhaps the best thing is to get your daughter mental help. In hindsight the later was good advice but at the time it wasn't the response I was looking for.
I tried every treatment out there for dry eye in record time. It takes most people yrs of dry eye before they consider sclerals. I was at the Boston Foundation for Sight less than 6 months after the initial onset. I was inpatient and desperate. Neither makes for a good combination.
By winter 07 I had given up completely. I won't elaborate on my specific actions but I was hospitalized against my will.
I was eventually released but continued to struggle. I was a shell of myself and existed but didn't live. Even at my sister's wedding where I forced myself to smile it was apparent that I wasn't really there. I had gained weight and let the rest of my appearance go as well. Prior to "becoming sick" I treated myself like a true princess so it was once again an indicator that all was not well in Kim's world.
I did make a half hearted attempt in 2008 to re-enter the "world". I took too big of steps and it failed beyond comprehension and once again I was hospitalized.
The toll on my mother was incomprehensible. My father ofcourse was effected but not to be biased I think many men express their concerns differently. While I had packed on the pounds my mom had lost over 50 pounds- not trying to. She would also burst into tears at work.
After my last hospitalization she told me that her greatest fear in life was losing me to this. My parents therefore took a line of credit on their home and sent me all the way to Arizona to go to an extensive month long program for pain management/depression.
I was skeptical but basically didnt care either way. The brochure had described it basically as a resort so I figured I would get one more vacation in. I know horrible to think that way but I like to be honest in my posts.
Well I can't say a miracle happened and I left 30 days later and said I was cured because that would be a lie. I have "Sjogrens" and I will most likely always have Sjogrens but the fire in me that had been blown out ignited again. I can't pinpoint the reason and probably never will but all I can say when you hit rock bottom you have two options stay there and never get out or decide that you yourself are going to change your life. I know I am being so over the top and cheesy, but heck that's me
. When I left the center I took tiny steps as opposed to big ones which I think was my prior mistake.
I know this a long long post so I was flash forward to present.
For the last 9 months I have worked and lived in NYC again. I took a job with a company, first an entry level easy position to test my eyes, then got promoted, and then promoted again. I am a manager now. I have told my new friends at work about my dryness and it stuns most of them. I am super concentrated at my job that no one thinks of me of having any type of disability. I also have let go most of my anger so I don't exude unhappiness/sadness anymore.
My eyes/mouth are still dry as a bone but I have developed strategies to live and work with them. I have trained myself not to stare which I didn't even realize I was training myself not to do but apparently I had. I keep beverages beside me at all times which in this day and age is not uncommon for people to do. While I am open to new treatment I have given up my crazy hunt for an instant cure. The frezziness of my life has toned down and I am living in the present.
I also have lost weight, took control of my hair back from the frizz, and started wearing my pretty little work dresses again. I haven't ventured out into the world of dating but I wasn't really fully into that world before summer 07 anyhows. I have always been shy in that arena
. I am very proud of myself these days for all that I have accomplished. I don't blame myself anymore for anything. All though I am not proud of being hospitalized, etc I am not ashamed either. Everyone has to take their own road. I am just happy I found my way back to the one I had set out for myself long before any Sjogrens developed in my body.
Although I don't post often I do read the board and I always feel especially for the young girls/guys who are faced with this condition. Although this is not the easiest lot in life it is doable. Although most people dont think much of dry eye the good ones out their do recognize courage, determination, and perserverance. Thats what dry eye to me represents now.
I have dry eye, I didn't choose this, but I do choose how I survive with it.
My well wishes are with everyone and I appreciate all the support I have gotten through this board and its members.
I want to give a special "shout out" to my good friend Odydnas who has been my angel. You have been a better friend to me, even though we have never met, than those who I have known for years. Congratulations on getting into grad school and like you always pushed me to be better I will push you into accepting and following through with the offers.
Thanks again to everybody and thank you Rebecca.
Love always,
Kimberly
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